September – October 2010 – Downstairs Bedroom – Sleeping & Feeding Problems – Hospital Showers - Our Last “Jersey Boys” Show!

Those good spirits began to fade as we moved through September. Carol had been having trouble sleeping for a few weeks but would now wake up numerous times during the night needing her position changed. Unfortunately Carol was no longer strong enough to move her own legs or roll onto her side so I needed to help. It was just that Carol couldn’t find a comfortable position for any length of time, and then she also started having dreams. There was nothing out of the ordinary in the dreams themselves except that they were vivid and would wake Carol up. That’s the thing about MND, the brain still works as well as it did before the disease appeared. So this previously active lady is trapped in a body that no longer works, with a mind that's as sharp as it’s ever been – life can be very cruel, and I know I’ve said that before.
  

We’d been having discussions for a while with the care team, and one of the specialists at Marie Therese House, and different medications had been tried without real success. So the next idea to try was a different mattress, a foam one like those on a hospital bed. That’s all well and good but these are single mattresses and we had a double bed – so here’s the picture for you – this single foam mattress is laid on top of our double mattress with a sheet covering them both. Carol sleeps(?!) on the foam mattress and I sleep(?!) on the 12 inches or so of our mattress that is still visible – there wasn’t much room for me to move! Anyway we persevered with this for quite a few weeks, but it didn’t really help to settle Carol’s sleep pattern down.

While all of this was going on the care team were becoming more and more concerned about Carol’s general body weakness. Transfers using the belt / turntable / stairlift were getting harder and Carol’s upper body strength when she was sat on the stairlift was now a worry. So we had to make the decision and move into the downstairs bedroom. We simply duplicated the bed set-up from upstairs, so the foam mattress was still in use, but Carol continued to be very restless.

This move downstairs made life easier for the care team and certainly helped them to relax somewhat as the stairlift was no longer being used. There was a new problem though – our bathroom was upstairs. Carol and the care team agreed that a daily bed bath was going to be the best way to solve the problem but they also arranged for Carol to have a weekly shower at Newquay hospital. So every Sunday morning I’d pack Carol into the car and drive over to meet one of the healthcare assistants at the hospital, and they’d give Carol a shower. I do recall plenty of laughter coming from that shower room, with the healthcare assistants usually ended up soaked, and it was a very welcome option while it lasted.

We had one final trip to London booked, as a treat for Bec’s birthday we took her and her friend Taneal up for the weekend. We stayed at the Holiday Inn again – in adjoining rooms – and had a couple of shows planned. We surprised Bec on Saturday afternoon with 2 tickets to see “Thriller” which is the Michael Jackson tribute show – but the two of us were obviously going to see “Jersey Boys”! Paula and Gary turned up as an added surprise for Bec and we had a meal together that evening. Sunday morning I’d booked us all on the London Eye and that was good, and I must compliment the wheelchair access and organisation of fast tracking for wheelchair customers – very much appreciated. Sunday afternoon’s show – can you guess? It was back to “Jersey Boys” again – I’m sure the theatre staff knew us by this point and for those keeping count it brought our total up to 9 shows in 9 months. What we didn’t realise at the time was that it would be the last time we’d see the show – as circumstances later in the year would have a real impact on our future options for travel. Anyway it was a great weekend and everybody enjoyed the trip.

The other issue that had started to creep up on us was that feeding Carol had become really quite difficult. Throughout the year there had been changes in what Carol could eat and drink, and you’ll recall that thickener was being used in liquids. As we moved into October I was getting more concerned about Carol’s feeding. I literally had to liquidise meals using a blender so that Carol could swallow them without choking. I’ve mentioned the fact that Carol’s arms and hands had gotten weaker throughout the year, but probably not made it clear that the impact of this progress would be that we were feeding Carol by this point. Carol could no longer hold a spoon to feed herself so we needed to help her with every meal.

My concerns were made worse by the fact that there had been no further movement on the PEG and we were about to go on holiday – I was just hoping there would be some way to get Carol through the cruise without incident.